Wednesday, April 23, 2014

Like many others in the world, I recently found out about the popular singer and judge from TV's "The Voice", Usher, having a newly diagnosed child with type 1 diabetes. I read many comments and posts online talking about whether or not he should now use his fame to advocate for this disease and raise awareness. I'm not going to talk about that topic today...instead I want to talk about perception.

Emma and I are huge fans of the show "The Voice"...we watch it together every week...it's sort of become a special mom/daughter time where we can just sit there on the couch together and listen to these amazing singers and laugh at the antics between Adam and Blake. Naturally, when I heard about Usher, I told Emma about it. She always finds it pretty cool to hear about famous people who are living with the same obstacles as her.

Anyway, we sat down to watch "The Voice" last night and I found myself focusing on Usher...paying closer attention to what he had to say and what he was doing. To be honest, I am not a fan of his music per se...just not my taste...but I've always thought he was a very talented individual. As I sat there watching him last night, I actually SAW him...I saw him in a different light. My perception of him changed all because of what I now knew of him. Here was this man, on my TV...millions of people watching him....and to know he now shares similar worries...similar fears...similar struggles...well, it made me see him in a whole new light.

I wonder if people see us differently since Emma's diagnosis. Do they see us in a new light? I know diabetes has changed me as a person in some ways...but deep down, I'm still the same girl. Perhaps the biggest difference I think is that I'm no longer so naive about things. I wonder if Ushers friends and family see him differently now. If they notice the worry behind the facade of coolness and control.

Life is strange sometimes. We wake up one morning thinking it's just another day and the next thing we know, we are changed forever...all because of one occurrence. Our perception of life and ourselves and those around us is changed.

My hope for Usher is that he can hold onto who he truly is deep down inside...that diabetes doesn't muddy that perception for him. It's difficult, but definitely not impossible.

When Emma saw him on TV last night, she smiled and said, "he's a D-Dad now." Simply put and beautifully true.

Saturday, April 19, 2014

Growing up, I was always the kid who liked arts and crafts...drawing, painting, making things....I loved it all. It was easy and freeing and I loved being able to use my hands to create something that evoked an emotion or feeling. However, I wasn't always a fan of being told I HAD to draw something or make something specific. Maybe it's my stubbornness...or my rebelliousness...or my need to be the one to decide what I wanted.

When I got to high school, I took a creative writing class as one of my electives and fell in love with writing. I was never a fan of having assigned writing topics or being told that I HAD to write about a specific thing. In my mind, I always thought....if it's supposed to be creative writing...how can I flex my creative muscles while being told what I had to write about?

Now as an adult, I can appreciate the assignments. I can appreciate the basics and the guidelines that were put in place. I can understand that nearly everything in life that's worth something, takes time. It takes patience. It takes a moment of organizing your thoughts and being able to rely on the basics.

I've come to realize that diabetes is sort of like that. When Emma was diagnosed, I knew nothing about the disease other than the ignorant belief that it would be a matter of never giving my kid sugar again and only feeding her fruits and veggies and healthy foods. That day I learned just how wrong I was. I learned the basics. I learned how to inject her with a pen needle. I learned how to check her blood sugar. I learned what was a safe blood sugar range for her. I learned how to fix a low and a high. I learned how to count carbs and how to keep her alive.

These basics have carried me through the last almost six years. They are common knowledge to me now and I don't really even have to think about it anymore...I just do it...it's second nature.

The little intricacies that I've discovered along the way have been shocking to my naive mind....and yet, as time keeps on ticking, they too have become second nature.

I recently met a newly diagnosed family. I found myself staring into the Moms eyes...seeing the ghost of my former self reflected back at me. I heard my own voice telling her that we've been at this for almost six years...and if there's anything I can do to help, just say the word...it will be ok...she will be fine...you can do this....all of the phrases that we tend to throw around in moments like that. I saw the Dad holding his 1 yr old little girl in his arms...smiling...staying close to the Mom. I saw them...really truly saw them. I saw the path they are about to embark on and I recognized every rut and obstacle...every clearing in the mist...every step...I saw it...because I started out on that same path myself.

It's scary and overwhelming and takes an enormous amount of courage to begin. Rely on the basics. Hold them close to your heart because they will save your sanity. The basics are what help you create something breathtaking and beautiful. The basics are what help you savour the moments that will change your life. The basics are what will help you have some control over deciding what YOU want to create...what YOU want to draw in your life...what YOU want to paint across the skies.

Sunday, April 13, 2014

Do you ever feel like you have no one that truly understands? No one that you can talk to without fear of judgement? No one that you feel comfortable enough with to just let it all out in a flurry of tears and hurt? Do you ever feel like no one gives a shit.? Do you ever feel like people expect you to have it all together and any time you have a true problem, there's no one to be found that steps up to the plate to lend an ear? Do you ever feel like after all these years your supposed to be the one who helps...the one who listens...the one who cares...the one who is the good friend...the reliable friend...the supportive friend? Do you ever find yourself sitting there at night alone...traitor tears falling from your eyes...all the events of the day swirling around in your head creating the perfect storm of chaos and sadness? Do you ever wish that just once....just one time someone else would be there to lift you up and tell you it's ok...I understand...I hear what you are saying and I want to help?

Yea...me too.

Sometimes being the strong one....the supportive one...the reliable friend...is hard. I have spent nearly six years building up a wall to protect myself from the insanity. Slapping a smile on my face and pretending like I'm always fine...I don't need help...I don't need a friend to understand me and be there for me like I would for them. It's a double edged sword really.....I don't like feeling weak...it's almost painful for me to ask for help or a shoulder to cry on or just a friend to listen. So I put out a vibe of joking around...laughing...being ok. I put it out there and I think I am really just fooling myself. It's true....most people don't get it really...most people don't care...most people have enough on their own plates and in their own lives, that why should I expect them to want to take on the job of hearing about my problems. So, instead, I lie to myself. Instead I keep moving. Instead I slap the smile on and laugh and act like I'm ok all the time.

Well, sometimes I'm not ok.

Sometimes I need help.

Sometimes I'm too tired to pretend.

Just because I've been at this for 6 years doesn't mean I don't have melt downs still and feel lost and alone. Sometimes I think the more time goes by, the less acceptable it is for me to admit I need a shoulder to lean on.

Saturday, April 12, 2014

No matter how bad it seems or how difficult the day is....there's always tomorrow...there's always a chance to try again.

This past week was hard. Like ridiculously hard. The difference this time though is that I've been on this ride before. I've waited in the line up...handed the squeaky voiced teen my ticket...and willingly or not, got on the ride. I tried to keep my arms and legs inside the moving vehicle at all times...I tried not to scream...I tried to hang on for dear life and keep my eyes closed until the ride was over.

I tried.

Sometimes the insanity of the numbers that come with changing seasons is enough to make me pack up our lives and move in search of that elusive place in this world where the temperature is always 75 degrees and sunny...it never rains...never storms...never gets humid...it's just consistent and even and not too hot or not too cold....it's juuuuust right. There must be a place like this somewhere on Earth.

Night turns into day...the awful memories of the previous evening are just echoes in my mind...stubborn lows...running out of snacks to treat the lows. It's funny how a low blood sugar moment can make you see the world in a different light....a familiar park so close to home can seem like it's in another country. The surrounding houses and the faces of the public are foreign...scary...worrisome. You frantically search for an escape plan...contemplating whether or not you will make it home...whether or not you ask a stranger for a juicebox...and if that would be enough. To know that the very thing you inject into your child's body to keep them alive.....is the very same thing that can kill them.....they're really are no words to describe what it's like to walk that tightrope balance every...single...moment.....of every single day. The pressure behind that responsibility is enough to send you to your knees if you let it invade your mind for too long.

And here we are at tomorrow.....which is now today....the sun is shining...the clouds in the sky are bright white in contrast to the blue surrounding them....fluffy...like cotton candy. Yesterday her face was as pale as a ghost....a vacant stare in her typically sparkling eyes. Today? Today she is running around at gymnastics with her friends...dancing to that "Happy" song. Yesterday's fight just an echo at this point.

Today I realize that while we may be destined to go on this ride forever....it's ok to scream...it's ok to force myself to keep my eyes wide open...it's ok to throw my hands in the air and let the air whoosh from my lungs. It's ok....because there's always the next breath....I can always inhale the next moment and begin again.

Diabetes is NOT about being in control, in my opinion. It's about trying...and reaching for the stars...but knowing that even if you miss this time...the ride will continue on.

Tuesday, April 8, 2014

So last night my friend and fellow D-Mom and I took our daughters to go see R5 in concert. I think it's important to make memories with your kid...give them as many life experiences as you can while they are young...show them that the world is full of infinite possibilities. I have taken Emma to a few concerts already in her young life and it always makes me smile to see the look on her face as she watches the flashing colourful lights...dancing and singing along to songs that she had previously only heard on TV or her iPod. No matter who the band is....it's always an experience to see them live and in person.

At one point during the show, I looked over to see both girls holding up their insulin pumps and meters with the screen lit up...just as other people in the crowd were holding their phones up...arms swaying to the beat of the music. It was funny....and sweet...and a little ironic all rolled into one. Here were these two young girls...cotton candy stickiness on their fingers...smiles on their faces...enjoying a concert just like every other kid in the arena.....using their diabetes devices in a most unique way.

See, a lot of times I get so wrapped up in the numbers....the needles...the carbs. I get so lost in the monotony and the routine. I get so wrapped up in the fact that our version of normal is in fact not really normal at all. I get so wrapped up in trying my hardest to ensure that my kid has a chance to live a worry free childhood...a carefree childhood...making sure that she gets the chance to just be a kid above all else.

I get so wrapped up in these things.....that I sometimes forget that diabetes isn't always the first thought in her head. Sometimes....just sometimes...it's simply about getting lost in the moment...with a friend who understands you...in the middle of a crowded arena. Getting lost in the song....and letting your unique light shine out with a grin on your face and a memory being made.

Life isn't about the struggles or the challenges or the hurdles you must overcome. It's not about the perfect number or the measure of your ability.

It's about making memories in spite of it all. It's about time together...time where you get lost in the moment...those are the things I want to give my kid...those are the things that matter.